Educate me: what is the difference between MERLD and HFA?

[Anonymous]

Anonymous wrote:
I have people try to convince me all the time that my kid isn't on the spectrum. Doesn't bother me at all. He has come a long way an no we didn't do ABA-tried it and it was the wrong approach for him. Even when he had delays, people tried to shoot down ASD. He had expressive and receptive delays (though i understand I must not call it MERLD even if other doctors have since ASD must be ruled out, but many called it MERLD) and these delays affected social communication-but no longer. He makes great eye contact, has friends, has great pretend play, etc. If you don't think he has ASD it does not matter because you are not on my kid's IEP team. All I care about is that our insurance company still reimburses for ST and OT and that his teachers understand his learning style.

I am a firm believer that we should respect and trust parents to know their children better than anyone else. If you believe your child is on the spectrum, I trust you. If you believe you child isn't on the spectrum, I also trust you. Sure some parents might be in denial about either one but who am I to judge? Especially since it can be hard to genuinely tell what is going on with a child just seeing them in specific contexts. They might "look" ASD but there clearly are many other things that can look similar and I'm not qualified to evaluate, especially when I just see them at school or the store.

I do think there is a strange contradictory thing happening. I know some parents who don't really think their child is ASD but push for that dx to make sure they get insurance coverage and support for their IEPs. Then there are some people who are terrified of an ASD label even if it fits their child and will go to crazy lengths to make sure they don't get the label. Then there are the people whose children are not ASD and are struggling to get services and insurance coverage for their non-ASD special needs kids. I really do believe that all of these exist out there and I don't feel like I have any right to judge any of them. We are all doing the best we can.

[Anonymous]

"I know some parents who don't really think their child is ASD but push for that dx to make sure they get insurance coverage and support for their IEPs."

I agree with all you say except for this part. I can't imagine how someone would go about doing this. It's been my experience that I take DC to be evaluated by a developmental pediatrician, child psychologist, etc. They evaluate and give me the diagnosis. How would one "push" for any particular dx?

[Anonymous]

If you want to know why parents are so terrified of having their child diagnosed with autism, it's because parents immediately start reading the blogs of other autism parents once someone suggests their child might be autistic. THAT'S what causes the crazy fear and stress. Autistic Disorder is a severe and lifelong condition. My friends' kids who have it will likely never live on their own without substantial supports, if at all. And that's THEIR assessment of the situation, not me being negative.

Now, the newly coined "ASD" is so loosely defined, it's currently meaningless.

[Anonymous]

Anonymous wrote:

Anonymous wrote:I am happy to educate you about the difference between HFA and MERLD but I also feel the need to express my dismay at the approach some on this thread have taken.

My son has MERLD and yes it is different from ASD. To somewhat simplify the difference - there are three criteria for ASD and my son really meets none of them. The 3 ASD criteria are reduced communication, stereotyped behaviors/stims, and restricted interests. My 3 year old son's language is at about a 12-14 month old level so his communication is severely behind but his social communication is typical meaning that he doesn't even truly meet the first criteria. We have been evaluated by 5 different people including a developmental ped, 2 child psychologists, 2 speech therapists, and a special education consultant. Every one of them has agreed that our son is not in any way on the spectrum. Although many kids with MERLD do also have sensory issues and neurological immaturity which can encourage stims and some other things associated with ASD (like reduced eye contact, not responding to their name, etc). My son is highly socially motivated, shares joint attention, has extensive pretend play, wants to be around people all the time, is very affectionate, responds appropriately to others' emotions, etc. In other words, he is missing the key component of ASD which is reduced social intent.

And yes I am defensive. Of course there is nothing wrong with being on the spectrum! If our son was ASD I would embrace that, but he isn't. Instead, when I come to places like this where I need support and a place to discuss the challenges we face, I am met with threads like this where people roll their eyes, imply I am in denial, and that I have shopped for a dx - as if I prefer MERLD to ASD for some reason.

For those of your whose children are on the spectrum, how would you feel if you were met with this response virtually every time you told someone your child was on the spectrum: /eye roll /pitying smile "yes sure your child is ASD. I'm not sure what you have against <X disorder> but clearly your child has the symptoms of that disorder, but if you can't handle it then ok. But really, is ASD even a real thing? It seems to me like ASD is the latest fad dx and I'm sure you must have shopped around to find a doctor to give you the dx you wanted to avoid <X disorder>. Is ASD even in the DSM?" I can tell you how it feels to hear that almost every time I tell someone what my son is dealing with. I feel defensive. I feel like I am being accused of being a bad mother whose denial is hurting her child. I feel angry because the person saying that does not know what they are talking about yet they feel free to judge me and my son.

A big part of the problem is that many different disorders share overlapping "red flag" behaviors with ASD and so people are quick to assume ASD with no real understanding of the ways in which other developmental delays can also encourage those red flags. This is true for clinicians and layman. Many doctors are not at all trained in the ability to pull apart the complex differences between language disorders and ASD, especially in younger children. As I said, for many younger MERLD kids, it is virtually impossible to figure out if they are on the spectrum or not. They tend to have reduced eye contact, don't respond to their name, can seem very socially withdrawn, can often have stress related or sensory stims, etc. The difference for MERLD kids is that, as their language skills improve, these all go away. As younger kids (I mean 2-3 years old) these kids can be virtually indistinguishable from ASD kids and this is one reason MERLD experts suggest younger children not be given a label at all until they are in the 3-5 years old range. There are also serious problems with some of the "behavioral checklist" type assessment tools that test for ASD. The ADOS is the most notorious example. On the ADOS test, when a child can't or won't respond verbally to a question enough for a clinician to assess certain things (such as unusual verbal tics) the test requires that the child get maximum points on that section. This ends up lumping MERLD kids onto the spectrum incorrectly.

What often happens with MERLD kids is that they get a PDD-nos dx when they are 2 or 3. Even then the dx might not seem exactly right but enough of it fits that parents and doctors often accept it. But then as the child gets older and their language improves, their ASD red flag behaviors go away and the parent is left confused because their child still clearly needs language support (and often behavioral help as well) but the ASD dx really no longer helps them understand what is going on with their child.

The other problem is that the therapies for MERLD kids are NOT the same. Yes many of the same floortime, play-based therapies will benefit anyone no matter their dx, but there are some therapies for ASD kids that are not recommended for MERLD kids. The easiest example is ABA therapy. ABA was developed by Lovaas at UCLA specifically for children on the spectrum to address the fact that kids on the spectrum tend to have reduced social motivation and so they require help with discrete behaviors, benefiting from a clear reward/punishment system. ABA can clearly significantly help many kids on the spectrum but for kids with MERLD who have typical social motivation it can be counterproductive. ABA is emphatically not recommended for kids with MERLD by the experts who work with MERLD kids and this is why an accurate dx really does matter.

Anyway, yes, I am defensive. I'm tired of feeling like I have to defend the disorder my child has. We have enough struggles to deal with without uninformed people insinuating that I am not doing everything I can to help my child.

I have people try to convince me all the time that my kid isn't on the spectrum. Doesn't bother me at all. He has come a long way an no we didn't do ABA-tried it and it was the wrong approach for him. Even when he had delays, people tried to shoot down ASD. He had expressive and receptive delays (though i understand I must not call it MERLD even if other doctors have since ASD must be ruled out, but many called it MERLD) and these delays affected social communication-but no longer. He makes great eye contact, has friends, has great pretend play, etc. If you don't think he has ASD it does not matter because you are not on my kid's IEP team. All I care about is that our insurance company still reimburses for ST and OT and that his teachers understand his learning style.

I will say this...long ago when I was on Baby Center posting about my babies delays a lot of well meaning moms of kids with ASD tried to gently tell me my kid sounded just like their kid and it infuriated me, though I would just thank them for sharing their stories. I would go out of my way to post about the doctor's who ruled out ASD and all the ways my child is social. I thought HOW DARE THEY?! However, even then I knew, they meant no harm. In the end I realized they had a point. The definitions of all these things will probably keep changing and really any kid with language delays in the expressive and receptive realm s going to be more likely to have social delays or as other posters mentioned they even may stim. The interventions are virtually the same for these symptoms regardless of the label.

And therein lies a HUGE problem. If your child has friends, great pretend play...you've really torpedoed the heart of both the Asperger's and Autism, and yet you still feel your child is ASD. Is it any wonder people all around you doubt you? And you are basically doing this for the insurance mone?

[Anonymous]

Anonymous wrote:"I know some parents who don't really think their child is ASD but push for that dx to make sure they get insurance coverage and support for their IEPs."

I agree with all you say except for this part. I can't imagine how someone would go about doing this. It's been my experience that I take DC to be evaluated by a developmental pediatrician, child psychologist, etc. They evaluate and give me the diagnosis. How would one "push" for any particular dx?

It's simple. You just take your child to a doctor who you know hands out autism Dxes liberally. Google around, you'll find parents COACHING other parents how to do this, and what to say. You'll also find doctors all over the Internet who say they give out autism Dxes to make sure a child gets services. I was encouraged to accept an "educational autism" label for my child -- even though it had been ruled out in a half-dozen evaluations -- because the school said I'd get more services. That's fraud, so I turned them down. My son is fully supported with his language label.


Interview with Dr. Richard Grinker on autism prevalance

http://www.pbs.org/newshour/bb/health/jan-june11/grinkerext_04-19.html

"" And what she told me is that in her research program, she is going to only give a child a diagnosis that fits exactly that research protocol. She's as rigorous as possible. But when it comes to a child in her private practice, she said, "We'll call that kid a zebra if he needs to be called a zebra to get the educational and other services that he needs and deserves." So the good clinician or the great clinician isn't necessarily going to be a slave to some kind of rigorous, scientific set of rules, but is going to give the diagnosis that helps that child the best at a particular point in time."

[Anonymous]

13:43 again. The heart of an Aspergers, ASD, DX is an impairment in social communication, repetitive behaviors, and obsessive interests. No where does it mention having/not having friends, amount og

[Anonymous]

Of social motivation, eye contact, etc.

[Anonymous]

The problem is... the therapies are often NOT the same with asd and MERLD, or other disorders like adhd or ggd which can cause language delays. That is where, as a parent, I get defensive (though my kids do not have MERLD, just expressive language delays). ABA is a good tool for most, but not all kids on the spectrum. It is the absolute wrong approach for kids not on the spectrum.
That is why I get defensive and upset. If ANY therapy would help, ASD labels are advantageious because, frankly, right now they often get special progam funding. But what works isn't appropriate for kids not on the spectrum.
I do not want my kids mislabeled because the therapies ARE different and I don't want my kids given therapies that are detrimental to their growth.
That said, for the parent of the asd kid who aba was a bad fit......
on the DSM-V there will be changes, and the broader spectrum of ASDs will be narrowed down, and there willl be a new disorder category called "social communication disorder" as well as narrowing and re-classifying of the existing classifications (I am NOT saying I knokw where your child would be classified in this, or even where most aspergers or hfa kids would fit). know many parents are up in arms about this, but I wonder... if this tightening and re-definition is to tigthen up individual classifications to hellp clinicians determine what type of therapies will benefit a child? I also have a good friend whose child has Aspergers, who sounds much like your son, and ABA would also be a diaster for him (social, friendly, sweet.. but he is definitely aspergers for many reasons). I am very glad for you and your son that yiu and his team recognized aba was detrimental and tried other therapies that help... but many of us have had the opposite, horrible experiences with therapies harming our kids' development. If you are a good parent, and are well informed and researched, you realize this, and fight for what is right for your child. But, sadly, not every parent with a specials need child is able to determine this, has a good team on their side, or know how to recognize what is helpful vs. Harmful.

That is why I get defensive. Labels DO matter because, a wrong one can end up getting your child the wrong therapy. Trust me, the wrong therapy is WORSE than no therapy. My kids are not MERLD or ASD, but do have an expressive language delay and/or disorder, whi,h has a good probability of being linked to adhd or dyslexia due to genetics. For them... the naturalistic therapies taught for language disorders are appropriate and have done wonders. Standard ASD therapies would backfire for them.

[Anonymous]

It's doubtful anyone wants the wrong diagnosis for their child. Well, except maybe the diagnosis shoppers as mentioned above who want to scam their insurance company although it should be noted that a wrong label can result in therapies that don't work or can even be harmful.

[Anonymous]

Also... this whole arguement re: lack of common communication signials typical people process as desire for social communication (as in Kanner's classic autism) or difficulties with the pragmatics of it, and way a person goes about socializing (as seen in mild Aspergers) I think highlight exactly WHY the re-definition in the DSM-V is necessary.

Befor Asperger's was recognized, there was a whole classification of people who had problems but weren't getting help. With the classification and addition into the spectrum, they now receive help. But, their symtoms, presentation, challenges, and sometimes therapies, are often different than children with classic or regressive autism, or childhood disintegration disorder or rett's.

But honestly, I think it takes a skilled clinician to diferentiate between a child with MERLD or other language disorder I.n combination with other issues, say, with global developlemt delays or adhd (which can present a extreme fixations at time), and a child with aspergers or HFA, especially when the child is young.

The problem is, in the US, most therapies come from the school system and NOT our medical system. There are psychologsts, but no really qualified individuals... like devepmental pediatricians, to provide accurate diagnosises. IMO this all should be handled medically, not through the schools. But it's not. So you get a bunch of technicians and a few speech pathologists or psychologists determining therapies for a child, where, in most cases, an extremely skilled professional should provide an evaluation.

In a system where people are not qualified to understand the nuances of childhood development are determining educational diagnosises, which determine therapies, I think a clarification of terminologies is necessary to help at least steer those unqualified people from assuming inappropriate therapies on a child.

[Anonymous]

Anonymous wrote:It's doubtful anyone wants the wrong diagnosis for their child. Well, except maybe the diagnosis shoppers as mentioned above who want to scam their insurance company although it should be noted that a wrong label can result in therapies that don't work or can even be harmful.

You have GOT to be kidding. I personally know several people who tried to see if their kids could get educational asd diagnosises because their kids would not otherwise get therapy, or would get barely anything, though the SCHOOL SYSTEMS. Unfortunately they werare .ot intelligent enough individuals to look into if the therapies would be wrong for their child's needs.

[Anonymous]

? I could be wrong but I've never heard of any child with Aspergers getting ABA. Isn't the standard treatment floor time or some type of play based therapy and facilitated social skills groups?

[Anonymous]

Anonymous wrote:13:43 again. The heart of an Aspergers, ASD, DX is an impairment in social communication, repetitive behaviors, and obsessive interests. No where does it mention having/not having friends, amount og

B. Would be friends.

299.80 Asperger's Disorder (or Asperger Syndrome)

An Asperger/HFA screening tool must meet all six areas defined by the DSM-IV description of Asperger Syndrome (A-F below) to qualify for a positive rating from First Signs:

A. Qualitative impairment in social interaction, as manifested by at least two of the following:

(1) marked impairment in the use of multiple nonverbal behaviors, such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction

(2) failure to develop peer relationships appropriate to developmental level

(3) a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest to other people)

(4) lack of social or emotional reciprocity

B. Restricted, repetitive, and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following:

(1) encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus

(2) apparently inflexible adherence to specific, nonfunctional routines or rituals

(3) stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements)

(4) persistent preoccupation with parts of objects

C. The disturbance causes clinically significant impairment in social, occupational, or other important areas of functioning.

D. There is no clinically significant general delay in language (e.g., single words used by age 2 years, communicative phrases used by age 3 years).

E. There is no clinically significant delay in cognitive development or in the development of age-appropriate self-help skills, adaptive behavior (other than in social interaction), and curiosity about the environment in childhood.

F. Criteria are not met for another specific pervasive developmental disorder or schizophrenia.

[Anonymous]

19:56 here-

Sorry...I meant "2" would be friends.

It's also of note that two of the experts who put Asperger's in the DSM IV to begin with said they UNdiagnose 50 percent to 90 percent of all the children brought to them, that parents and doctors and schools ARE NOT FOLLOWING THE CRITERIA.

This is likely why they are planning to remove Asperger's, and replace a similar category with Social Communication Disorder, which will not be on the so-called "spectrum."

[Anonymous]

I was told my Asperger's child will still qualify as ASD under the new DSM-V. Actually, everyone has diagnosis now as Asperger's/ASD in light of the new DSM coming out. His ADOS scores are right at the margin but his repetitive behaviors and his obsessions puts him on the spectrum. Also, I've seen him in the classroom and there is no question on our part that he is ASD. DS says he has friends - but the quality of his "friendships" is not the same developmentally as his NT peers. His developmental pediatrician categorizes him as "classic" Asperger's now ASD.

Sorry to ramble off topic... I agree with the pp that HFA and MERLD presents the same especially when the child is young. My suggestion would be to get a developmental pediatrician and/or a team diagnosis at Children's or KK for an initial diagnosis to figure out the nuances between them rather than relying on an educational assessment.